Riley's story

Told by her mother Chloe.

Riley with Molly's DollyRiley’s condition wasn’t picked up at ante-natal scans or after birth. When she was six and a half weeks old we took her to hospital for the first time because we were concerned about her being sleepy and refusing feeds. It was the end of January 2020.

The doctor on duty noticed her struggling to breathe – you could see her ribs sucking inwards. At first it was suspected that she had bronchiolitis, but a chest x-ray showed that her heart was enlarged.

Riley deteriorated very quickly in the local hospital. Eventually we were flown from Inverness to the cardiac centre at the Royal Hospital for Children in Glasgow, over 100 miles. My parents met us there a few hours later. Riley had her first echocardiogram shortly after we arrived. The scan showed that Riley had mitral valve regurgitation, and her left atrium was enlarged to the size of both her ventricles.

Riley had her open-heart surgery at exactly seven weeks old to replace her mitral valve with a mechanical one. After a few wound infections and a second trip back to theatre to wash it out, we ended up spending a total of two months in hospital. When we were finally able to make the long drive back home we were locked down after a couple of days because of the COVID-19 pandemic.

Riley will be on warfarin for the rest of her life, we need to check her INR levels often, and she will need future surgeries, but she is thriving now, and we are so thankful to be home and spending quality time together, watching her grow and learn.

Medical terms.

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